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littrella 10-29-2013 04:34 PM

finally have a diagnosis
After a fun filled day with Dr appointments, blood draws & tests, Dr says I have fairly severe fibromyalgia. Trying out a med & she says I should feel 100% better in less than a week. Still kinda freaked out & more than a little scared. Hopefully I'm headed in the right direction

amp23 10-29-2013 04:37 PM

I don't know anything about fibromyalgi.. But at least you have a definite diagnosis and you have meds to help you feel better! Keep your head up. *hugs*

CLaPorte432 10-29-2013 04:39 PM

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I thought Fibromyalgia had no diagnostic testing?

That it was more along the lines of..."Well, you don't have this...this...or this...And we dont know what it is...So lets diagnose Fibromyalgia and put you on X, Y, and Z."

^^^ BTW, That is NOT meant to be sarcastic, Im legitimately interested in this... (I promise)
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littrella 10-29-2013 04:43 PM

We did blood work & other tests to rule out other things. Since I also have migraines, had to rule out brain tumors or anurisum (sp). Blood work to rule out vitamin D deficiency...

hoiski 10-30-2013 12:50 AM

Sorry you have fibromyalgia. I have it too. No fun! At least you have a doctor who believes it's real and is willing to treat it. For me it was nice to finally have a diagnosis. I hope your treatment works well. They did a bunch of tests on me to rule out other things too. Then they did the tenderpoint test. Ouch! But at least I finally had a name for what I was dealing with. The challenge I run into now is that there are so many theories about what causes fibro and nothing definite. Some docs believe in it and some don't. Finding treatments that work is kind of like finding the right antidepressant--sometimes you have to try a bunch to find the right one or the right combo for you. It's a journey. Good luck. I'm happy to share my experiences and what's worked for me. And if you find something that works well, let me know. Sending hugs . . .
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hoiski 10-30-2013 12:51 AM

Oops. Posted twice.

MissingStar 10-30-2013 07:18 AM

You have my sympathy.

My sister-in-law has this condition and she say that the only thing worse than the chronic pain was the "not being believed" that goes along with an invisible illness. Even once she had a diagnosis, it wasn't easy for some folks in her circle of friends to comprehend what she was dealing with on a daily basis. Thankfully, she has an excellent doctor and she is now doing well.

I forwarded her a copy of Dr Frank Rice's recent study, where he believes his team have found a "rational biological source of pain in the skin of patients with fibromyalgia". She found it very relevant to her but, obviously, each individual case is not the same as the next.

I wish you all the best with your treatment.

RhondaLynn 10-30-2013 01:56 PM

I also have fibro, going to different doctors and talking to people trying to figure out what was wrong with me was very depressing!! Finally I also got a diagnosis and that was wonderful to just know I wasn't CRAZY!!!

For me personally, (each fibro case is different) I had to figure out what caused my fibro to flair up.. then I figured out that if I worked hard, I had to REST hard. Good rest was the key to keeping my fibro bearable. Good luck in your quest for relief!!!


littrella 10-30-2013 05:56 PM

My Dr gave me Savella. I have a history of reacting badly to meds, so we are only doing 12.5 mg once a day. I haven't really been in what I would call pain, just sore all the time. My biggest problem is how exausted I've been. For the last month, it's been hard for me to stay awake past 6:30pm. Today was my 2nd day on meds, we'll see how it goes

NBEventer 10-30-2013 06:05 PM

I have fibro as well. I have it fairly severe and I have crohn's to top it off *head desk*

I am on amitriptyline for my fibro. I get the crippling migraines that come with it as well. It was a process of elimination for me to get diagnosed. I had CT Scans, MRI's, Spinal Taps, x-rays, blood work... the list goes on. The final prognosis was fibromyalgia and I have somewhat gotten control of it over the last 3 years.

However a new diagnosis of crohn's has turned my body upside down.

There is a group on facebook for fibro, I suggest "liking" it. They post lots of interesting facts and articles about fibromyalgia and its actually pretty neat as they also talk about different ways of coping with it.

The only downside to the diagnosis is a lot of people don't really take it serious. When you say you have fibro they tend to roll their eyes and go "yea thats what they diagnose you with when they can't figure anything else out." it can be frustrating, however more and more awareness is being brought to it and alternate therapies are being discovered.

Some things that have helped me:

Making sure I get at LEAST 8 hours of sleep every night
Napping when my body says "nap!"
Avoiding gluten
Avoiding alcohol
Keeping active

and most importantly... Listening to my body. You REALLY need to be tuned in with your body and listen to it. It will tell you what your limitations are.

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